Saturday, November 21, 2015

Epilepsy Awareness Month: CTE and Epilepsy – Making the Connection

The connection between blows to the head (even those not resulting in a concussion) and Chronic Traumatic Encephalopathy (CTE) is clear thanks to the persistence, innovation and research of Dr. Bennet Omalu, a forensic pathologist and the doctor who wrote the book, “Play Hard, Die Young: Football Dementia, Depression and Death.”

CTE is quite the hot topic right now because of the number of high profile NFL players confirmed to have CTE (including Junior Seau) and the NFL finally recognizing the dangers of repeated concussions. It doesn’t hurt to have Will Smith releasing a new movie, “Concussion”, which is based on Dr. Omalu’s work.

What exactly is CTE?

The UC Davis Medical Center (a university at which Dr. Omalu is part of the faculty) describes CTE as a “progressive, degenerative disease that results from repetitive brain trauma that can only be definitively diagnosed after death.”   CTE cannot be confirmed until a post-mortem brain analysis checks for tau proteins but brain imaging while the person is alive can be reviewed for “markers” of the tau protein. Interestingly, tau protein is “an abnormal protein common in the brains of elderly Alzheimer’s patients.”

The CTE Center at Boston University describes the symptoms of CTE as including “memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, anxiety, suicidality, parkinsonism and, eventually, progressive dementia.”

Robert has (or has had) every single one of those symptoms.

I am convinced there is a link between CTE and epilepsy.

I am no scientist. Heck, I couldn’t even take biology because I refused to dissect a frog. But I am pretty good at observation. And research. And taking notes. And being pretty darn persistent.

I know what Robert was like as a child. His motor and verbal skills were perfectly normal. He had trouble in school but mainly because he missed quite a bit of it because of doctor appointments and medications and seizures and he also was diagnosed with ADD (probably ADHD, now that I think about it).

Robert grew up on a variety of anti-seizure medications and did not wear a helmet until he was well into his twenties and continued to have uncontrolled seizures and falls.

There were a lot of head injuries and concussions. He had numerous falls resulting in all kinds of injuries (including a near-drowning) and more head injuries than any of us could count.

Robert’s head injuries alone could be the reason for the symptoms he now has.  The depression and attempted suicide Robert experienced as a teenager could have been the result of medications or epilepsy.  Or was it CTE?

More than a year ago, Robert was hospitalized for a few weeks because he could not use his legs. At the time, he was using a walker and we had to make the switch to a wheelchair. He quickly lost the ability to even transfer from the wheelchair to the bed or to another seat. He was sleeping constantly. He was very, very sick and his neurologist thought he might have “cervical disk disease with myelopathy.”  A CT scan showed he does have that but while in the hospital, the neurologist on rotation also diagnosed him with Parkinsonism. I asked about CTE and she agreed with me about seeing the symptoms.

Let’s include epilepsy in the discussion about CTE.

What if the falls and head injuries are not the only contributing factor to CTE?

What if the uncontrolled seizures are causing CTE?

What if the depression associated with epilepsy is actually because of CTE?

What if epilepsy itself is a cause of CTE? 

When I broached the subject with Robert’s Neuro Nurse Practitioner, she thought these were great questions. The neurologist, probably playing devil’s advocate, asked something to the effect of what good it would do to know whether epilepsy can result in CTE.

My answer:  PLENTY!!!

If there is a connection between epilepsy and CTE then the research can move in a whole new direction, possibly finding new medications and treatments for epilepsy.

If that is not reason enough, then consider:

If there is a connection between epilepsy and CTE, parents may be more inclined to make their kids wear a helmet. Our parents did not make Robert wear a helmet because he didn’t like it – it made him look different. (Keep in mind, this was before kids even wore helmets to wear a bike or before motorcycle helmets were required.)

If there is a connection . . . helmet technology would have even more reason to improve! Let’s make more improved helmets to better protect those precious brains during a fall.

If there is a connection . . . there is even more reason to strive for a cure. To reach 100% seizure control. If uncontrolled seizures can take Robert from a lively, outgoing, mobile rascal of a kid to a depressed teenager to a 50 year old who cannot remember what he did earlier in the day, then it can happen to others with uncontrolled seizures too.

If there is a connection . . . the availability of caregiver resources and respite will need to rise to the occasion. If we, as caregivers, are managing the health and well-being of a person with uncontrolled epilepsy and know that in the future there will be more and more care needed, then we have to be prepared. I would have loved to have known that Robert’s steep decline was just ahead as I began to care for him. Not because I would have refused to take on the job but because I would then know what I was in for and could plan for it.

If there is a connection . . . the availability of social services will need to increase. Day Programs and social service agencies handling an increasingly needy population will be understaffed and underfunded if we do not recognize the decline in people with uncontrolled epilepsy. These agencies are already understaffed and underfunded but gathering data about the impending increased needs of consumers will allow these agencies to plan for it.

If there is a connection . . . research will have to improve and become better funded. There is already an enormous burden on the healthcare system to care for the chronically ill, disabled and elderly. Robert’s care is paid for by Medicare and Medi-Cal – I know the extraordinary costs associated with his care and know the government (and, frankly, the people) are paying for it. Multiply his costs by a million (a third of those with epilepsy do not have seizure control) and the numbers are . . . , well, ridiculous. (I am not a mathematician either.) 

I am not trying to alarm anyone who has uncontrolled seizures or who is caring for someone with uncontrolled seizures.

I understand no one wants to talk about the long-term effects of uncontrolled epilepsy. We want to be in the category of those with epilepsy living long, productive lives. The long-term effects can be scary as hell.

However, just as many people don’t realize SUDEP is a very real risk from uncontrolled seizures, a possible link between epilepsy and CTE needs to be discussed and researched.

Let’s at least include epilepsy in the discussion of CTE. Let’s do some research to see where this takes us.

Let’s give families another reason to find a cure for epilepsy and to get the support and help they need in treating epilepsy.

Let’s not be alarmed – let’s do something about it.


Anonymous said...

Check out DARPA and the research they are doing for CTE and TBI.

God bless you all. The reason I found you is I had epilepsy for 15 years due to low blood sugar and hormones. Many grand mals, petite mals, and falls onto cement flooring. CTE is me to a T.

Trish Hughes Kreis said...

Thank you for the heads up on the info. I will certainly check it out. I think we're on to something about a connection between CTE and epilepsy. Thank you so much for reading! Take care!

"PICTURE THIS" 40 and Beyond said...

I just left a long rant after watching a video on CTE, produced by the University of California posted on 11/18/2015 i believe is the date. Anyway i vented about the fact that it doesn't appear to be an uproar about the fact that people with epilepsy have the same issues that occur from brain trauma. I've had seizures since i was 9yrs old, I'm now 40 and my seizures are controlled. However I've had numerous seizures between the time i was diagnosed until the present Due to stress or my Dr. trying to wean me off my meds and it not working, or me forgetting to take my meds when i was very young which i didn't do too often but it has happened more than once (they are so small a lot of the times and i take them so fast i forget whether i did or didn't and in some case i didn't or some cases i was so stressed out i didn't care; not gonna lie, don't advocate it at all). Anyway my point is with all the seizures I've had i would think it would constitute a Dr. giving me a CTE scan and also explaining why/how my brain injury could lead to other neurological and psychological issues possibly deadly ones. I don't know if they don't want to frighten people or if they feel that people are not intelligent enough to get it but i would rather have a Dr. tell me the truth that have me come to the office once a year ask if I've had seizures in the past year if not write me a meds prescription and send me on my way until the next year. I don't even get EEG's but once in a blue moon now, it seems. Yet I've experienced some stuff that disturbs me I've reported it have been given meds to cut the stress but i take meds that put me to sleep already. Anyway i'm ranting again. I can only imagine the adverse effects on the brain of a person having seizures everyday. I think it's terrible and should be looked at or information already studied, shared and doctors should be more honest with us about what other problems will likely occur from the seizures and the meds.

RNmom5 said...

How do we know it's the seizures causing the damage and not the medications? For all we know the medications increase the release of the proteins. Although having seizures may mean your risk is increased of developing CTE, seizures are a symptom of some sort of injury to brain and this injury is still the cause of CTE. This does not mean that I believe this to be a fact. It is just a possibility and research needs to continue before we get the correct answers.